I plead insanity…Cytokine Storm Mania

My kids can vouch for me.

Being chronically ill is likened to being traumatized all over again. On top of being a survivor of previous abusive situations, I likened my situation to triggering all of the above all at once. With Mast Cell Activation your body goes into a cytokine storm. When I mentioned being allergic to your bullshit, my bullshit, stress, and all the other junk in between, I wasn’t kidding. It’s true.

Your body has a response mechanism to cytokine storms, and once your mast cells are activated, no matter the mitigating factor, it activates my mast cells as well. Stress me out, and I lose my shit. If my body is in critical attack, I literally lose my shit… sometimes I forget everything, need to sleep, or scream. I really have no control over it. Other times I hyper react, overthink, and literally drive everyone nuts around me talking about a subject matter three or four times until they’re bored. It’s essentially like having ADHD mixed with a good dose of memory loss.

Most of my life it’s been contributed to me being annoying, obnoxious, crazy. Well essentially, I do go crazy a little. When my body is in crisis at the ER, sometimes I can black out and say things I don’t even know I have said. One critical time, the resident doctor feared even coming into the room to talk to me even before I was released.

I had went to an outdoor wedding that day, and I was just not feeling right. My husband and I had left a little early, and I went home to change clothes. Something was brewing and I couldn’t put my finger on it at that moment. I was going to the garage, and had told my husband, I needed to go to the hospital. I made it to the landing in that garage, and bam, total neurological shut down. I could speak, but I couldn’t open my eyes, I couldn’t move my body, arms and legs totally dysfunctional. My caretaker and husband tag teamed picking me up and sort of dragging me to the truck to get me to the hospital. I am ever so grateful for the wonderful family I have in my life.

That was my life changing moment in the ER. My body was overcome by mold and yeast, I was literally foaming at the mouth, the thrush was so bad in my mouth. I had taken 30 Benadryl to keep me alive, because who can freaking afford an EPI Pen at those kinds of prices, and then still have to go to the ER anyway?! It’s highway robbery to try and save your life. I was in anaphylactic shock, and I needed help.

My husband took me to the nearest ER and they stuck me directly in a Covid wing, my body had went into neurological shut down, I seized in their waiting room while checking in, yet they stuck me in a COVID wing! I was furious. As soon as my legs could work again (I’m assuming from ingesting all the Benadryl), I got up out of that bed and told the whole staff to, “Go fuck yourselves.” Not my proudest moment, because they called security and threatened to call the police until they got the IV start out of my arm. I promptly had my husband drive me to the next nearest ER.

That moment was when I really freaked out the resident doctor, and my husband really doesn’t tell me much other than, he said, “You got MEAN.” I had blacked out. The paresthesia in my veins was so bad at that point, that it took them four hours to get the IV in, and when I did “come to life” again, I was confused but not surprised they had me strapped to the bed. The turning point, I had full function of my brain again, for the first time in years, my body fully functioning like normal. I wanted to see the man who listened, and administered the treatment that saved my life that day! It took a GRAND amount of pleading with the nurses “I’m nice again, I promise.” Sheepishly the doctor came in to receive the “thank you” that he so very much deserved and appreciated, then I told him my story, and he told me to write the book.

Apparently, the mold and yeasts had taken over my body! When they Iv’d an antifungal through my veins, everything miraculously came back to me! I don’t knock the medical field in anyway shape or form, but I am a product of being mistreated over and over again, and when I say, “You can fire your doctor!” I damn well mean it! Find the ones who are in the field and ask why they started it in the first place, TO HELP PEOPLE. You treat that first appointment like you are interviewing them. Unless you are in a position you can’t advocate for yourself, NEVER RELENT to just letting them do whatever. FIGHT for yourself and your needs! However, I suggest you do it as nicely as possible. My mother-in-law always told me, “You can catch more bees with honey, than you can with vinegar.” She’s not wrong.

That day was the day, I realized, that there was SOMETHING in my Garage, that was a PROBLEM, and I set out to find why! After all, I had suffered seizures in there, and a concussion… it was time to figure out why my body had neurological problems with my own home.

“You’re just full of shit.”

That’s what one of my physicians told me, literally word for word.

This physician was staring at my x-ray puzzled as to why I looked so swollen and that I literally was full of human excrement, and hot air. Insert the various jokes, of how much I’ve heard that in my lifetime, for one various reason or another. It does NOTHING for your psyche when you are chronically ill, chronically bloated, chronically FULL to the point you can’t eat, sleep, walk, or function.

I wasn’t intending on hearing these words, but that was the most likely explanation, after all, I saw the x-rays myself, and that’s exactly what it looked like to me. Now at this point, we didn’t know I had Mast Cell Activation, we didn’t suspect that my mast cells were swelling my bowels so that they wouldn’t work, but that is exactly what was happening. So, for the first year, and 3 emergency room visits, what do you think they did? Gave me human drain cleaner, I drank more MiraLAX than what was absolutely necessary for a human to do, and WAYYY MORE than a colonoscopy requires.

Eventually when I found a Gastroenterologist that was willing to take my case and LISTEN to me (I did have to fire one.) we identified that all I had managed to do was get an awesome gut infection that required medication that required them to fight with my insurance to cover the $2k plus a pill to get rid of said infection. They managed to get it done, but it wasn’t fun, and it took 3 months to heal the infection. That Gastroenterologist was annoyed that not one PHYSICIAN, ER or otherwise had suggested when I’m consuming massive amounts of human drain cleaner that it would be wise of me to be on a probiotic, it could have prevented all of that mess.

Don’t ask me about the room. I couldn’t bend over to even clean. Felt like the blueberry girl from the Wonka movies.

Talk about a blow to the gut, very literally. I was suffering for nearly an entire year and a half, with no idea what I was fighting. Again, we didn’t know MCAS was even a thing then. However, the characteristic of mast cell is that when something is agitated in the body, it gets inflamed, much like the hives, or a mosquito bite or bee sting.

After we were able to get the bowels calmed down, it’s when we found that my lady parts had already been swollen 7 times the size due to polycystic ovarian syndrome, and Fibroids…and then scheduled to have said dysfunctional items to be removed. I’d only given birth to one child, blessed with helping many others grow, and married into becoming a mother to another child, I was okay at the age of 40 to give up my right to birth. I nearly died just giving birth to the first one, it took me YEARS to even get pregnant the first time, my psyche was already okay to give up that part of me. That’s when we found the bladder issue, my bladder had been crushed, it had created another issue in the process, it’s called Interstitial Cystitis of the bladder. Essentially when it swells because it’s mad, it rips the walls open and basically has an allergic reaction to anything I eat or drink, causing great abdominal pain, heartburn issues and the like.

One hot mess is where I was in life at that time. Couple that with beginning to lose my sanity… I wouldn’t wish what I had gone through at this point on anyone.

This was my live in caretaker, and also cousin. My partner in crime, when he was available to attend appointments with me. Blessed to have him with me every step of this journey.

Never Listening = Natural Remedies

So with no meds…. where do I go from here? My search for healing starts with Amazon…

You are going to see ads for the things I’m using, and feel free to do the same research that I did. I’ve spent hours, days, months, but feel free if you would like to start reading the medical journals like I did.

If you have gotten to this blog, and you’ve followed all the blogs since I have started, you are going to realize that I have a HOST of ailments, along with Mast Cell Activation, Fibromyalgia, and Neuropathy, Paresthesia, and Interstitial Cystitis of the bladder, so this woman has literally been researching all the systems on Google and reading the articles, to find NATURAL remedies that didn’t require me to ingest allergens, and acids. Neat little fact, I’m allergic to peanuts, trees, grass, oh and some fungus (due to the mold) and YEAST, yes, I’m allergic to the yeast that grows in our own bodies. Wrap your mind around that!

I’m not a webpage editor or anything, so if you just follow the links to the things that I found that help me, you can order them directly.

When you need a little pick me up…

Green Coffee Extract provides Polyphenols important for Hypothalamus Function in your brain!

And when it comes to my brain I’m all about neurodegeneration and repair, so if you read up on this link, you’ll find why Polyphenols are important to me as well!

Nutrients for hypothalamus and pituitary gland production (medicalnewstoday.com)

For Urinary Tract Health 1-2 tsp in warm water a day… is just as beneficial!

I really wish I would have learned about Forest Flame Tree powder also known as Butea Monosperma years ago, the benefits are amazing. Read up on the link below if you don’t believe me. It tastes similar to instant powder tea, so if you can make a shot in warm water and drink it quickly, it’s not so bad. You can visit the article link listed below, if you want to see the benefits for yourself.

https://www.researchgate.net/publication/333973413_Butea_Monosperma_Phytochemistry_and_Pharmacology

Allergic to Yoga…

If you ever wanted an excuse to be allergic to exercise, Mast Cell Activation Syndrome and Fibromyalgia are your friends.

Desperate for answers I employed a friend to follow me to this giant diagnostic hospital for answers. My family physician thought it would be time for me to visit a Rheumatologist. Considering the options that I was running out of, I opted for the closest facility.

Neat fact, I should have opted to be dumped at the front door, because just getting to where we needed to be in that building I wanted to curl up in a ball and die. I do have to say, my friend opted to get me a wheelchair, but I’m a little stubborn about resorting to that when my legs aren’t broken, they just hurt ALOT. By the time we got to the waiting area, I have nothing left in my reserves, exertion of any sort would make me sleep for days. I wanted to cut off my feet they hurt so bad. When I would get overheated, I couldn’t breathe, I’d break out in a weird rash, sweats, EVERYTHING on my body HURT. I was lucky if I wasn’t having Parkinson’s like tremoring, and walking with all the physical pain on top of the random neurological symptoms was HARD. I was 40 at this time, (before my actual dementia diagnosis I believe) and I’m hunched over with a dementia type gait, because my nervous system has had ENOUGH, I’m shuffling around like I’m 80-90 yrs. old like I’d lived my best life already, I’m just getting started!

I got to visit the doctor along with my huge 4″ binder file that was forwarded to them before I even attended the facility. I was sent for random testing, then the Rheumatologist walks in starts poking me, and talking with me, and EVERYTHING she touched hurt. Oh…you have Fibromyalgia. Oh great, I thought to myself. This doctor quickly leaves the room and informs me I’m to see another person at another facility in an hour. “ANOTHER DIAGNOSIS, that people think is a load of total nonsense”, I thought to myself. (I only had a few believers in my small circle of loved ones that I was even ill at all.) I used to be one of those people that didn’t believe Fibromyalgia was a thing. In a few short minutes I was ever so sorry for EVER thinking that way, because when you look at people with chronic illness, sometimes YOU HAVE NO IDEA there’s anything wrong, and now I WAS ONE OF THOSE PATIENTS, talk about eating a HUGE PIECE OF HUMBLE PIE.

Clarification is needed at this moment in time. Apparently when your brain shrinks and you start to have pain issues like I have, your brain is the central (computer) of your nervous system. It runs all of the things, including the nervous system that is all those tiny wires that go all the way to your fingertips, toes, and in your skin. Well, when they get mad…. you’re just done. Just sleep is what my neurologist had told me. The only thing that will make it calm down is to hit the reset button on your personal computer (brain) so it’s time you sleep. Let me tell you, SLEEP was my OTHER hobby already, but the guy isn’t lying. (Note: When I mean sleep, I was taking naps throughout the day, because I had some insane insomnia at night, I was not actually getting a full 8 hours of restful sleep a night and that IS WAY MORE IMPORTANT than napping.) Later on, I would figure out that sleep is a big deal when you are basically experiencing neurological pain and neuroinflammatory processes, but I wouldn’t learn that for a long time later.

Back to the whole big diagnostic hospital event…. they sent me to see the actual REAL NURSE RATCHED in the flesh. At least that’s what my friend and I named her. I sat in front of this woman, as she spoke down to me like I WAS SEEKING MEDS. I had already told her my journey, and shared with her I WAS ALLERGIC to all said NARCOTICS, and ALL I WANT IS MY LIFE BACK, and explained to her, that I NEVER SIT STILL until I got sick. I WANT MY LIFE BACK without the drugs! This woman for real, asked me straight up, “Have you tried YOGA?!” I don’t remember the colorful things that followed but I did sum it up, we are wasting each other’s time and left. I WAS SO ALLERGIC TO HER JABBER, I just wanted to go home.

“People with fibromyalgia experienced significant pain and fatigue in the exercising muscle during recovery from low-intensity and short-duration resistance exercise, with greater pain during concentric contractions.” states the PubMed website.

https://pubmed.ncbi.nlm.nih.gov/37384640/

Observational Study posted about Localized Pain and Fatigue During Recovery From Submaximal Resistance Exercise in People With Fibromyalgia

The stress just made me hurt worse, and I was over the day, and so was my friend to be honest. Obviously, that physician isn’t aware that Mast Cell Activation Syndrome makes you ALLERGIC to exercise and physical exertion. (Little did I know that basically, Fibromyalgia gave you the same symptoms after exertion too.) I guess I feel as though our medical system is flawed because when new illnesses are identified there should be some type of education about it, and there is. Some people receive it, others do not, that goes for both patients and physicians; there’s a disconnect. However, it’s the free will of the physicians you employ on whether or not they choose to continue to educate themselves and indulge in educating you in the illnesses you are diagnosed with. In this particular experience, I received a diagnosis with no education, then sent to Nurse Ratched to ask me if I had tried yoga, with no backstory or education as to why I needed it, or the benefits to it and the diagnosis I had just received a few hours before. I was confused, tired, angry, and in excruciating pain, just to make the trip and the walk into these facilities to see these people.

Remember, physicians can be hired and fired too, and you can get second opinions. Just because you have seen one doesn’t always mean you take their word as the written word of some saint in a book like the Bible. Trust your instincts and will to live!

Looking back on this experience, it was the start of when I began educating myself. In hindsight, I just got so mad that I still knew nothing when I left. Indirectly, it sent me into a domino effect of healing. First, I started reading, that was neurological stimulation even if I read only one paragraph a day, if you know, you know that brain fog is no joke. This in turn exercised my brain just enough to remain in the real world long enough to continue to strive for another few paragraphs the next day, until I was reading solidly again. Second, I did figure out that any type of exercise is better than no exercise, whether its walking in a pool, doing a sauna, just light stretching, or yoga, or simply going grocery shopping it stimulates oxygen in the brain and that was particularly important for my central nervous system. Do I exercise? NO, but I did force myself to remain as active as my body would allow, and even now I still overdo it, and have to sleep for a day or two. Has the pain improved? Absolutely! It doesn’t happen overnight, but out of pure stubbornness you got to start somewhere, right? I did.

Another Bottle of Pills on the wall…

Another bottle of pills…take one down, pass it around, another prescription to add to them all!

I have a shelf…. that holds EVERY bottle of prescription pills, that followed me everywhere along the way. If you see this shelf, it harbors, the pills, creams, powders, and various elixirs, some of them missing already, that carried me throughout this systemic illness. I don’t use them, some of them are a few years old, but when I was losing my mind, I was trusting that with each symptom, each prescription handed to me, would garner me a glimpse of relief.

Some of those pills did, some did not, and some made me feel like I was going blind, or various other side effects. I’m not saying don’t do what your physicians recommend doing, but remember, I don’t listen, and now I’m hard of hearing (at least in the left ear: never sneeze with a cotton swab in your left ear, you can pop your ear drum, you know that warning label… yeah you get my point)

That my dear is apparently your job, or your care taker’s job. Who has time for that? Well FIND THE DAMN TIME child, your momma isn’t going to do it for you. This was at the point, where I was taking my health into my own hands and REFUSED to let anyone put me in my grave early, or make me leave my kids when they need me the most, without putting up the biggest damn fight of my life. I was supposed to be dead by February of 2022, I’m still here bitches!

You get diagnosed with something like Early Onset Dementia, and literally you are lucky if you have 4 years left. Mind you, I still may have to relinquish to dementia, but dammit…not yet, not right now, I refuse. I am curious about that MRI though, if I have filled the black deficits in my head or not, or if they are getting worse. I do know one thing, this woman right here…. feels better than she has in years, and here I am writing the story to live forever on the interwebs. If you have found me, there is a reason…. stay tuned!!

I still don’t listen…

(Sorry dad, it is what it is. I’m going to Google it.)

It’s a theme here, as you can see, I have a stubborn streak in me that is fierce. Refusing to listen as a child was my favorite hobby for many reasons. When these symptoms cropped up, I started Googling like hell, and that was the first thing I was told to STOP doing. Don’t Google it, don’t do what you pay the doctors to do.

Let me tell you this warning: If you Google, do it right. Google the system first, if you are losing blood after you’ve had diarrhea for days, search those webs for Gastrointestinal tract and start from scratch. The only way to learn about something is to gain the knowledge of its system and function first. Even though you own the car, and have for 7 years, doesn’t mean that you’ve ever seen the fuel light, or the little button that adjusts your gas pedal, but it MIGHT or MIGHT not be there, so remember this. Same with your body.

If you go for symptoms first, you’re going to panic, because every symptom is going to lead to a death-defying disease or illness. You’re going to be thinking that you’re in the midst of a heart attack, when you are literally just having heart palpitations because you just gave yourself a damn panic attack over searching the internet wrong.

I’ve spent years when my brain allowed me to have focus to read about the systems that were going awry in body. The doctors followed and treated my symptoms which found me a tiny bit of relief. Especially when it came to the GI tract and tachycardia, random rashes, and things they COULD treat. I say the things they COULD treat, because there’s one thing about me that they couldn’t really treat, and that was my dying brain. I had two MRIs and was scheduled for a third but got cancelled during the pandemic.

The first was to find my baseline 80 yr old brain. The second was to ck the possible (TBI traumatic brain injury) concussion that I had suffered from a fall when I lost function going down the stairs in my garage. Ever know why a dog won’t sit its arse directly on a concrete floor when it’s cold out? Well, I know now, and that shit is not pleasant, get the dog a damn rug. The third, was for yet another concussion, when I slipped on the ice at my new job and smacked my head so hard, that the officer who witnessed it turned his vehicle around, and asked if I needed EMT, but alas, when you are the only manager in the store with a key, I opted to just go on my merry way with my damn headache.

In my defense, my thought process was at the point where another blast to my head wasn’t really going to hurt, since that particular area that I had smacked on the iced over pavement, just so happened to already be missing brain matter there, so it probably won’t hurt much. *Insert sarcasm here* No dad, it didn’t “knock anymore sense” into my thick skull either, at least I don’t think so…I guess, this is where you can actually remind me that I don’t have a PHD, so you are absolutely correct there, I’m still not a doctor. However, we never got that MRI rescheduled either, we’ve had a few insurance changes since then, thanks to my hubby’s employer so, I’m going to wait this one out just a little bit longer, until our insurance changes again, probably another year, as it will probably take me six months just to get to see my neurologist again.

Symptoms…

And the never-ending list of specialists.

First and foremost, I had noticed that I had started steadily gaining weight. What I mean by that, for me is that I used to gain a good 10 lbs monthly the week before my “Aunt Flo” came to visit me. Then it would steadily die down. However, this time, it just kept coming and not disappearing. For some reason, it didn’t faze me at first, and it really should have.

My knowledge base in eating properly was pretty good. I used to work out consistently and had been able to maintain a healthy weight even after not working out for a few years. During my pregnancy with my child, I had been pre gestational diabetic, so I was sent to a nutritionist, and I checked my blood sugars often and ate appropriately for my daily needs. In fact, I was so worried about it, I REVISITED a nutritionist, just to REFRESH my memory, and was told I was doing everything right. Yet, I’m packing on weight, and one month it was 18lbs in a month!

Picture representing a host of specialists from: freepik

At this point, I have a cardiologist, a kidney specialist, a gastroenterologist, and my own gynecologist, and neurologist studying my case, along with a new practitioner because my reliable one had retired. The kidney specialist, who was one of the amazing people that saved my life, gave me hope and a willingness to keep fighting looked me in the eye and said, “There is NO WAY that any person on the planet can physically eat that much to possibly gain that much weight in one month.” My caloric intake had literally gone down to approximately 500 calories a day if I was lucky.

To consume food, would cause misery in my GI tract that I was not prepared for. My right-side abdomen would reel in pain, I would be doubled over in pain. My throat would feel like it was still consuming whatever I had eaten the day before. Heartburn had become my middle name. Even the task of brushing my teeth that would send me gagging, and my stomach “snapping’ like a rubber band against my esophagus (at least that’s the best way to explain it). None of it made sense, but here I was rocking systemic illness.

Yet I continued to gain… there were days that I would BALLOON, to the point that I actually looked pregnant. In fact, one Thanksgiving my family witnessed me eat a 6″ tiny plate of food and balloon from 38 inches around to 54 inches around, in a matter of three hours! I promptly went home to go to bed, missing out on my family I love so much.

Then there was the fact that I was losing my ability to remember things. My short-term memory was beginning to be shot, and I lost my ability to recall long term memories as well. Tremors in my hands took away my ability to bake and decorate cakes from my home when my kids slept. My favorite hobby and secondary way of making a tiny bit of income, and that was shot as well. My daytime job, it wasn’t a possibility at that point. I worked in the service industry. Customers that have known me since I was a child, whom I had dealt with at least once or twice yearly, I was beginning to forget their names. The customers that hit the hardest for me, that really convinced me it was time to go home, was my bestie’s parents, that I’ve known since the third grade, I couldn’t remember their names that day I saw them walk into the business. I cried all the way home the day I had to resign from my job and give in to my illness.

When this took over my life….. I was a service writer, baker at night, ran a private counseling group online for abused women, mother, stepmother, taxi driver, tutor, and ran the household. Slowly each and everything was taken away from me. The one thing that I begged each doctor and specialist was, “I don’t want drugs, I WANT MY LIFE BACK.”

The MOLD…

That the darkness brought into my life.

Remember that tornado? Remember the nails it removed from my roof? Well think about that for a minute. Those tiny little nail holes can let in some water over the years. As time progressed, hidden mold began to grow in a wall, that was shared between my garage and bedroom.

Some people in your household can totally be unaffected by things like this, where others will fall down with illness so fast it will make your head spin. That’s me, not that I volunteered for the position, but somehow my susceptibility to neurotoxins is much higher than others in my household.

The science behind my susceptibility is that I’m genetically predisposed to this medical mystery.

Man in protective hazmat suit cleaning mold on the wall illustration

Stachybotrys mold was starting to grow silently hidden without our knowledge. Keep in mind, I had lived nearly 40 years not even knowing I had Mast Cell Activation, but all the signs were there. In fact, it didn’t even have a name until recently. Stachybotrys and aspergillus just happened to be secretly releasing neurotoxins into the air in my home, and no one had a clue this was occurring. It did take two to three years for the accumulation big enough to create a systemic whirlwind of illnesses that made no sense. The battle I was fighting didn’t make sense, but I was begging for my life back one piece at a time, as it was slowly taken from me.

MCAS: Mast Cell Activation Syndrome

What is this? Allergic to BULLSHIT

“The term “mast cell activation syndrome (MCAS)” is finding increasing use as a diagnosis for individuals who present with signs and symptoms involving the dermis, gastrointestinal track and cardiovascular system; frequently accompanied by neurologic complaints. Such patients often have undergone multiple extensive medical evaluations by different physicians in varied disciplines without a definitive medical diagnosis until the diagnosis of “MCAS” is applied. However, “MCAS” as a distinct clinical entity has not been generally accepted nor do there exist definitive criteria for diagnosis.”[1]

I’m fast forwarding through years of specialists and stories to get you to this point. This is what it is, well sort of. The best way to explain it, is I’m allergic to everything. Essentially, I’m allergic to bullshit, I’m allergic to your bullshit, my bullshit, environmental bullshit… You get the idea.

Best way to describe it, is like this. Today, I want to expose myself to extreme heat, and then work out, by the time I decide to do anything else, take a cold shower (you’re going to get hives) or eat your favorite high histamine meal, or have a margarita, ( be prepped with your epi pen, you may be welcoming anaphylactic shock into your dinner plans) unless you take all the antihistamines necessary to just walk out into the sun.

A basic sunburn makes my face swell and turn me into a sad attempt at looking like Frankenstein. My eyelids, forehead, skin swelled. For the ones who passed 7th grade science…. remember a cell with a nucleus? Remember our skin cells are made up of 7 layers of skin cells? Imagine all 7 layers of cells, swelling like 10x their size. It felt like my skin was a mask on my face, I could do nothing but ingest more antihistamines to get rid of the swelling. ALLERGIC TO A SUNBURN… I think of all the systemic diseases out there, this is the most bullshit illness to deal with. Happiness can easily get sucked OUT OF EVERYTHING you ever experience or have experienced in your life, with one accidental exposure, or spending one extra ounce of energy where it didn’t count that day.

AND IF YOU ARE STRESSED….. just forget about it that day, you might as well stay at home. Each added on additional stressor from that point will shoot you in the foot for days, you’ll wind up in bed anyway, praying to be able to sleep for the following two to three days to recuperate. In fact, sleep is your friend when you have Mast Cell Activation.


Right After the Burn
The Morning After
Swelling Started

[1] Akin, Cem et al. “Mast cell activation syndrome: Proposed diagnostic criteria.” The Journal of allergy and clinical immunology vol. 126,6 (2010): 1099-104.e4. doi:10.1016/j.jaci.2010.08.035

So it begins…

After that fateful day of the tornado, I did the one thing that NO ONE ever warns anyone about, especially if you are an asthmatic or allergy sufferer. DO NOT GO OUTSIDE (if at all possible) a few days after a tornado, 3 days is safest to be exact. By this time, you probably have realized, that I don’t listen to many safeguarded warnings anyway, so it would have been lost on me. We had gone outside to review the damages from the tornado. That was a BAD idea to say the least.

I ended up with a severe lung infection right after that. I suffered for months, and we were at a weird point in life, where that was the approaching transition of our healthcare system, and we didn’t have healthcare at that point. I literally was suffering some severe sinus/lung infection from the exposure to all the contaminates that were floating around in the air. Now that we are post-pandemic, my realization that I shouldn’t have ever walked out into that air without an N95 at least to filter some of the contamination would have been smart; but no one was thinking about that at the moment. In fact, even with the most recent tragic events of chemical spills, and fires from industrial warehouses, I’m certain there’s still others out there that don’t consider of safeguarding themselves from the exposures with a mask. (We now despise the thought of those things being on our faces again.) My experience is, they should be in your emergency kits for every purpose from now on, especially if you are a fellow “Mast-er” (Mast Cell Activation Sufferer).

This image has an empty alt attribute; its file name is girl-face-mask.webp

When I’m referring to contamination, I’m literally saying anything from mold spores on the ground, to random chemicals in neighboring properties mixed with rusts, and various shreds of building materials are now floating particulates waiting to be inhaled. My lungs CONSUMED it all. This in turn, gave me this crazy infection, and then I start breaking out in hives. Weird rashes would pop up when cold and heat hit my skin, when I took a shower, the water hurt my skin similar to a full body tattoo. I recall looking at my husband one morning and asking him, “Why does the water hurt my skin?” When leaving the house, I had to have every inch of my skin covered, in fear that more welts would appear out of nowhere, I was living a literal nightmare. My go to meds were my albuterol inhalers and it took me a month or so before I broke down and drug my husband and I to an urgent care clinic to get antibiotics. He was sick too, but not the sick that I was, his was a minor sinus infection, congestion.

It was important to share that with you, because not only was I under a “Stress response” type situation, unbeknownst to myself, my mast cell activation syndrome became ACTIVATED.

That’s my wonderful awesome cousin on the left, I’m on the right at the height of my illness. My aunt in the back is pulling bunny ear shenanigans. Love them dearly, some of my biggest supporters, the let me enjoy that weekend although I spent much of it sleeping not being able to communicate. This photo means so much to me, the love I received even though I was a shell of myself.